You can tell a bad disease by the length of its name and when you struggle pronouncing it you know that the medical profession has picked a good one. Fibrodysplasia Ossificans Progressiva or more commonly known as FOP is a progressive disease that causes bone to form in the muscles and other soft tissues in the body, which eventually restricts movement. At the moment there is no cure for FOP and money is needed to help to fund the research into the disease.
FOP is a surprisingly rare disease and there are only 45 diagnosed sufferers in the UK, with 700 confirmed cases across the world. To put that into perspective that relates to 1 in 2million people. Its strange though when such a rare disease enters your life and we have learnt more about it when Dave’s cousin Kelly had the diagnosis given to her lovely little girl Jasmine at the age of 19 months.
Kelly, Jasmine (middle) & Sienna
It’s hard to know what to do when someone in your family is ill as everyone just wants to help so we were really pleased that we could put our skills to good use and build a website to help raise the awareness of FOP in the UK and to hopefully generate more fundraising and donations. We have recently launched the website for FOP Action and we have built it on a WordPress platform so that the News and Information can be updated when ever needed. We will be helping Kelly to become fully trained in how to use a WordPress site, so that she and the other people connected to FOP Action can keep the site up to date to help the sufferers and anyone who has been recently disgnosed.
Lets hope that one day they will find a cure for this terrible disease.
Update: I’d also like to say a personal thankyou to Alex from Indigo Clothing for doing some t-shirt printing free of charge for FOP Action so that they can now wear their branded FOP tshirts at fundraising events, and also to Steve at Click4beds who has offered to give Jasmine a new mattress that will help her sleep better at night. We have also received lots of other support from people who are helping to promote the website and raise awareness and more importantly funds for FOP research.